Michael Slezak

If anyone wants a miracle cure for multiple sclerosis, it's Brian Lee. Diagnosed with MS in 1999 just after the birth of his second son, his disease progressed faster than usual. Within seven years, he was permanently confined to a wheelchair and he has slowly started losing control of his body.

''My left arm is stuffed, you might say, and my right is going that way quickly … As a result, I'm having trouble feeding myself,'' he says.

Disappointed ... "It left me as stuffed as I was before," says Brian Lee, of Lane Cove, who had the controversial surgery, with his son Felix. Photo: Marco Del Grande

But like many questions about MS, Lee, 51, has few answers about how his condition will progress.

''It's completely unpredictable. I might never get any worse or I could end up bedridden.''

Like many people living with MS, Lee considered trying the many ''miracle cures'' to be found online. He was too sceptical to try high-pressure oxygen therapy, bee-sting therapy, or many unproven dietary supplements. But he did try removing all his amalgam fillings after claims they caused the disease.

But one day he heard about an outspoken Italian doctor with a radical surgical treatment for MS. Controversially dubbed ''liberation therapy'', it seemed to have amazing results in early clinical trials, with patients who were previously unable to walk 100 metres suddenly able to walk for kilometres. Stories of miraculous recoveries were posted on YouTube and dominated MS patient forums on the internet.

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This miracle cure appeared to have scientific support and was the kind of thing Lee, a software technician with two years of a medical degree under his belt, could sign up for.

Dr Paolo Zamboni is a phlebologist - an expert in veins and the circulatory system. When his wife was diagnosed with MS, he discovered what he thinks is the cause of the degenerative brain disease. Perhaps unsurprisingly, given his background, he proposed that MS was essentially a disorder of the veins.

Almost all neurologists - the specialists who treat MS - think the disease is a result of the patient's immune system attacking the protective coverings of nerves in the brain and spine: myelin sheaths. They have theories about why this happens but nobody knows for sure.

Zamboni says the degeneration of myelin sheaths is actually the result of a blockage in the vein in the neck that drains blood from the brain.

Chronic cerebrospinal venous insufficiency, or CCSVI, is said to cause the degeneration by slowing the rate at which blood flows through the brain.

Ahead of his visit to Australia this week, Zamboni explained the process from his office in Ferrara, Italy.

He says these blockages result in the brain's natural defence mechanisms being weakened, allowing damage and inflammation in the brain caused by various things, including toxins, bacteria and viruses.

He proposes MS patients with a blockage have a surgical procedure known as balloon angioplasty. A small deflated balloon is inserted into the groin, guided to the vein in the neck and inflated, stretching the tightened vein and allowing blood to flow more freely. Often this procedure has to be repeated every couple of months as the blockage reappears.

Initial studies conducted by Zamboni seemed promising but independent teams have had difficulty replicating the early findings.

Strangely, while there is almost unanimous support for the theory among Zamboni's colleagues of vascular specialists, there is near-unanimous scepticism among neurologists, who mostly think the theory is not just wrong but completely implausible.

Speaking off the record, several neurologists said the whole idea was ''silly'', with one going as far as to say it was ''completely ridiculous''.

Those who speak on the record are careful in their criticisms but express universal concern over the ethics of conducting serious surgery on the basis of an unproven theory.

But the surgery continues. And so it should, says Zamboni, who is pleased that patients around the world, including in Australia, are able to bypass their sceptical neurologists to get the treatment.

Great strides have been made in MS research over the past few years but a lot remains tragically out of reach.

New and increasingly effective drugs that protect the brain against the patient's immune response have resulted in a dramatic reduction in symptoms and transformed the lives of many people with MS.

But there are no drugs that can cure the condition. The newer more effective drugs can be hit and miss with strong side-effects, while others are not completely safe.

It is widely believed among experts that MS is dramatically more common the further you get from the equator, with people in Tasmania six times more likely to have the disease than people in Queensland. Research has suggested this is explained by links with vitamin D and sunlight but even this latitudinal distribution has recently been questioned (see box).

MS remains an enigmatic disorder and the lack of knowledge about its cause and the absence of effective therapies for those who are severely affected perhaps partly explains the ferocious enthusiasm many patients have towards Zamboni's theory.

Almost 2000 people have signed up to the Australian CCSVI Facebook page, with tens of thousands more signed up to similar pages in Canada, the US and elsewhere.

The global CCSVI movement has the feeling of a political uprising. Patient advocates claim to have the truth: a truth being suppressed by rich doctors who have a financial interest in the current orthodoxy in which there is no cure.

As a political movement, it is an unusually successful one.

Adolfo Gianni helps run the Australian CCSVI Facebook page, created in late 2009. ''Effectively, all that was intended was to let other people with MS know about this discovery,'' he says.

His Facebook group, and others like it, have changed the way MS is treated. A recent article in a phlebology journal points out that while most procedures are required to go through rigorous clinical trials before they are rolled out, treatment for CCSVI in MS is already being done all over the world.

The paper's authors say this ''is largely attributed to patient demand fuelled by the information conveyed by social networking websites''.

But enthusiasm can turn ugly.

Neurologists who have criticised the theory have found themselves the target of vicious internet attacks and several doctors approached by the Herald refused to speak on the record.

On the Australian Facebook page and other internet forums such as thisisms.com, neurologists are referred to by name and accused of ignoring evidence proving Zamboni's theory. A commonly expressed view is that neurologists are in the pockets of drug companies and are therefore unwilling to consider non-drug treatments. The reasoning is that if CCSVI is the cause of MS, it can be cured and drug companies will stop making money.

Adolfo says neurologists are keen to maintain the status quo and show an ''indifference'' to their patients' pleadings to consider CCSVI.

''Look, the status quo is that it's a $US9 billion a year industry … What I'm saying is that neurologists are willingly overlooking a possibly causative factor which contributes to MS.''

One of Australia's leading neurologists, who does not want his name mentioned for fear of vilification, says he is deeply upset by the claims.

''What we're being accused of is quite nasty from a doctor's perspective; deliberately keeping our patients sick because we want to make money from them.''

With all the disagreement, it can be difficult for newly diagnosed patients to wade through the debate.

Brian Lee is very scientifically literate but even he had trouble working out what to believe about CCSVI.

Initially, Zamboni reported finding that about 90 per cent of people with MS had blockages in their jugular veins, compared with virtually no healthy patients.

After further trials, this figure was revised and small independent studies have repeatedly been unable to show any difference in the rate of blockages in MS and healthy patients.

The Herald approached half a dozen of Australia's leading neurologists and they all expressed similar sentiments: the theory is implausible and there is now no credible evidence to support it. Moreover, there is a building body of evidence suggesting the initial findings were mistaken.

''If your question is, how plausible is it? I don't think there is any reproducible evidence thus far to support it,'' says Dr Michael Barnett, senior lecturer in neurology at the University of Sydney and head of the MS Clinic at the Brain and Mind Research Institute. He stresses, however, that nobody completely understands MS so the initial findings need to be properly tested in a large controlled trial.

Until then, the invasiveness of the surgery means he and many other neurologists consider it ''negligent'' for doctors to perform the procedure outside a clinical trial.

''The last thing we want to continue is what's happening now, where patients are having ad hoc procedures for something that is unproven and might harm them.''

Patients who have treatment for CCSVI and experience improvements seem to be powerful arguments in favour of the theory. But as Barnett points out, there are people who seem to get better after receiving all kinds of strange and unproven treatments.

Early MS is characterised by periods of sickness and of wellness, something that allows for mistaken links to easily be drawn. And placebos are known to be very effective for many conditions, meaning the treatment doesn't have to actually do anything to appear to make a difference.

''The problem is, there's up to a 30 per cent improvement with any treatment you give. I have patients who sting themselves 30 times a day with bees and they tell me that makes a great improvement.

''I have patients who take low dose naltrexone [a drug for treating heroin dependence] who tell me it makes a great deal of difference. I have patients who spend $50 a week on probiotic yoghurt who tell me it makes a great deal of difference.''

He is quick to point out that CCSVI may not fall into the same category but we can't decide until further evidence is produced.

Phlebologists like Zamboni, on the other hand, agree more studies should be done but don't think patients should have to wait for further trials. ''I am fully convinced that CCSVI is a strong contributing factor to a complex multifactorial disease,'' he told the Herald.

''It plays a role in increasing the susceptibility to MS and to a bad prognosis, as well.''

The founder of the Australasian College of Phlebology, Dr Paul Thibault, agrees. He accepts there are problems with the treatment and questions the theory but adds: ''Clinical trials are not necessarily the way to sort these problems out.''

He says that given the improvements he's seen in patients after the treatment, there's no reason to withhold it from patients who are not enrolled in clinical trials.

In response to the growing evidence pointing to no association between vein blockages and MS, Zamboni says the researchers are simply not trained properly. He says technicians need time to develop skills to detect CCSVI reliably. When his lab started doing the research, they found CCSVI in only 65 per cent of MS patients but two years later, they were finding it in 90 per cent.

He believes the negative results of other groups are also a result of bias and that people unwilling to find an association will manage to avoid finding one. But sceptics say this argument runs both ways: his group is clearly invested in finding an association and might therefore be biased in favour of finding one.

The Australasian College of Phlebology and The Royal Australian and New Zealand College of Radiologists have no official position on the surgery. MS Australia recommends against having it done outside a clinical trial, although CCSVI Australia, supported by MS Australia, will hold an open forum about the procedure on Saturday. It will be live in Melbourne with an interactive broadcast to venues in Canberra and Sydney.

Zamboni is hopeful the Australian conference and one just completed in Italy will help build consensus around his theory and help more patients obtain the treatment.

Against the recommendation of his neurologist, Lee parted with about $3000 and underwent surgery for CCSVI last October, joining about 200 other Australians and more than 12,000 people worldwide. The surgery didn't hurt him but it didn't do him any good either.

''It left me as stuffed as I was before,'' he says.

Although he was prepared for the operation not to work, he couldn't help but be disappointed.

''You've got to roll with the punches. It's unfortunate but that's what happened to me. I'm getting used to it.

''Although the procedure really did me virtually no benefit at all, I don't regret doing it and in the same situation, I would do it again.''

But Barnett is hopeful about the future of non-invasive treatments for MS patients.

''The world of MS therapy is exploding after 20 years of having just four immunomodulatory drugs,'' he says.

New drugs soon to be available are said to dramatically reduce relapses for patients early in their disease. But Barnett says what is needed are drugs that can promote restorative functions in the brain, allowing damaged nerve coverings to repair, rather than just those that target inflammation in the brain.

''At the moment, we don't have those drugs but we have several that are in early-stage trials.

''When those drugs come about and we can treat the disease from two angles, that's when we'll really be able to help people.''